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Bone & Joint

Bone & Joint Care

The information on this page represents the recommended standard of care for Duchenne muscular dystrophy. Most of the care recommendations also apply to Becker muscular dystrophy, but at older ages. Most, but not all, people with Duchenne are males—but the care recommendations apply to both males and females with Duchenne. 

If you don’t understand any of the medical terms and concepts, ask your healthcare providers. Take notes and ask questions during your clinical visits.

Remember

Bone & Joint Facts to Remember

1. People who have Duchenne often have weak bones, especially if they are taking steroids.
2. It is important to have the right amount of calcium and vitamin D to make bones stronger. Ask your doctor about the correct amount.
3. Your doctor should watch your spine closely after you stop walking, especially if you are still growing.
4. If you have back pain, you should see your doctor.
5. Although rare, FES should be considered if shortness of breath or neurological symptoms develop after a fall/fracture/trauma.

 

Common Bone Health Issues

People who have Duchenne often have weak bones. Steroids (glucocorticoids) also affect bone health. Steroids decrease the amount of calcium in the bones, causing the bones to become thinner and weaker (eventually leading to osteoporosis). There are a few issues to be aware of regarding bone health and Duchenne.

  • Low levels of calium and vitamin D
    It is important that people with Duchenne have the right amount of calcium and vitamin D to make their bones stronger. Ask your doctor and dietician about foods rich in vitamin D and calcium, and whether supplements are needed.

  • Scoliosis
    Doctors should watch the spine closely. As back muscles become weaker, the spine may begin to curve (scoliosis). Scoliosis may make it difficult to sit in a wheelchair. Learn more about Scoliosis in Duchenne.

  • Fractures due to osteoporosis
    As bones become weak and thin (osteoporosis), there is more chance of broken bones (fractures) in the legs and back. If you have a leg fracture and were able to walk well before your fracture, ask the doctor if it is possible to have surgery (internal fixation) rather than casting (external fixation). Surgery may help preserve muscles so people with Duchenne can start walking again sooner than if they have casting.

  • Compression fractures
    Some of the bones in the spine (vertebrae) may begin to collapse because they are thin, putting more pressure on other vertebrae and causing them to break. This is called a compression fracture. Steroids may slow down the development of scoliosis, but may increase the risk of compression fractures.

  • Contractures
    Pre-teens, teens, and adults may find it more difficult to move their feet, knees, hips, and elbow joints, which may become locked in one position (contractures).

  • Risk of Fat Embolism Syndrome (FES) following fall/fracture/trauma
    While rare, fat embolism syndrome (FES) develops quickly, and the consequences are serious and life threatening. FES should be considered if shortness of breath or neurologic changes (confusion, disorientation, “not acting like themselves”) occur after a fall or trauma. Learn more about the symptoms of FES you need to look out for, and what to do if your child falls, is bumped or dropped, and develops FES symptoms.

Recommended Care

Below is the recommended standard care for bones and joints. Talk to your doctor about care options that go above standard care.

  • Take spinal x-rays
    Make sure your doctor checks your spine during every visit. Have spinal x-rays every year while you are still growing. Your doctor should watch your spine closely after you stop walking to look for scoliosis. If the curve in your back (scoliosis) is severe, you should have x-rays at least every 6 months. Your doctor should also do an x-ray if you have a problem or complaint, such as back pain.
     
  • Have a dual-energy x-ray absorptiometry (DEXA OR DXA) scan
    A DEXA scans is a painless x-ray that measures the density of the bones and may help identify weak or thinning bones (osteoporosis). Your doctor may do a first DEXA scan when you are about 3 years old, or when you start taking steroids. DEXA scans should be done in facilities that are equipped and staffed to test children. Doctors also suggest annual DEXA scans for people who take steroids, have a history of broken bones, or who had an abnormal DEXA scan result.
     
  • Have blood and urine tests
    Blood and urine tests provide information about vitamin D and calcium levels and may help your doctor or dietician recommend doses of vitamin D and calcium supplements, if they are needed. Vitamin D levels should be checked annually.
     
  • Consider spinal fusion surgery
    Spinal fusion surgery connects the individual bones (vertebrae) in your spinal column so they don’t move. This surgery can help straighten a curve in your spine (scoliosis) or keep it from getting worse. It may relieve pain from broken spinal bones and breathing problems caused by scoliosis. Talk to your healthcare team about the pros and cons of spinal fusion surgery.
     
  • Use wheelchair inserts
    If you are using a wheelchair, you should have inserts on it so you can sit upright. If you are not having spinal surgery and your back pain is getting worse, a back brace may help.
     
  • Do weight-bearing exercises and stretches
    Weight-bearing exercises recommended by your doctor or therapist can help your bones stay strong for a longer period of time. Starting when you are young, your muscles and joints should be stretched 4 to 6 times a week. This can help delay and minimize your joints becoming locked in one position (contractures). Ask your doctor and physical therapist about helpful stretches and exercises to do.
Fat Embolism Syndrome (FES)
Although rare, FES should be considered if shortness of breath or neurological symptoms develop after a fall/fracture/trauma.

LEARN MORE   

Scoliosis
Doctors should watch the spine closely. As back muscles become weaker, the spine may begin to curve. Scoliosis may make it difficult to sit in a wheelchair.

LEARN MORE   

 

Related links

Understanding and Caring for Bone Health (download)
Endocrine System: Bone Health - For Parents (download)
Endocrine System: Bone Health - For People with Duchenne (download)
Care Guidelines
Taking Steps Towards Reducing Osteoporosis in DMD
Osteoporosis in DMD from the 1/16/04 workshop
Report on Osteoporosis (PPT presented by Doug Biggar, MD, FRCP(C)

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